Lets do a Sh*t People say to Metastatic BC Patients
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Sadly, people saying rude or ignorant things is just a part of life. When my older dd was a toddler, she was a bit pigeon toed when she walked. A woman came over to me, in the post office, gently tapped me on the shoulder and said (as she pointed to my daughter) "They can do something about that now a days, you know." For a moment. I had no idea what she meant. When I realized what she was referring to I said, "Oh, are YOU a pediatrician?" She shrank back a little and declared that she was just trying to help. My dd, now age 29 walks quite normally and has for quite some time.
Caryn0 -
On the subject of Parkinson's disease and Metastatic BC.
This is apples to oranges as my grandmother was 80 ( me; diagnosed age 50) when she was diagnosed with BC. She had a mastectomy and took the then new drug Tamoxifen. She was found to have bone mets at age 85. A church lady friend "jokingly' said at least you know what you will die from....Grandma died at age 93 officially from Parkinson's disease.
She also was the oldest member at the local fitness club attending water aerobics classes 2 to 3 times a week till age 90... She never dwelt on the past but lived life to the fullest. She is my mentor.
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Hi Tish, my Mom had breast cancer at the age of 65, she had a lumpectomy and rads. No surgery. She is doing fine. She was dx with Parkinson's at the age of 76. I guess this guy thought I'd feel better not dying of a Parkinson's related death. My Mom is doing fine, just moves a little slower but the meds she's on keeps the shakes under control. She has a strong heart, healthy lungs, basically healthy except for the Parkinson's..thank God. This guy forgot I just turned 50 and would love to live for another 30 years to see my son have children and get to be a doting grandmother like my Mom. I wanted him to know that dying young (or sort of young) is never a preferred choice. Yes, everyone dies of something, I just wanted to be around to grow old. Your Grandma certainly was a great role model, it's fantastic to have someone like that in your life.
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aaoaao, Your story about your 50th birthday celebration being rudely interrupted just made my jaw drop. Honestly! Even though I know some people can make ridiculous, insensitive comments and ask rude and downright weird questions, some times I am just blown away! Your story reminded me about being trapped in the dental chair, with the hygienist telling me about her mother's very difficult journey to death after being diagnosed with mets and crying throughout her story, right after I had given her updated health information, which included my mets diagnosis. Also, right after my first cancer diagnosis, I went to an already scheduled dental appointment and faced the "be positive lecture," in which I was assured I would survive and never have to worry about cancer again if only I managed a super-positive attitude throughout all the treatment and whatever followed. Hmmm...interesting note to self: avoid dental appointments right after any news of diagnosis or significant change in condition....
Also, one of the things I ask, when I feel at a loss for words, is: "Was that comment meant to be helpful or to be hurtful? Because if it was meant to be helpful, you really missed the mark." And if I am really appalled and very hurt, I change that last sentence to "Because if it was meant to be hurtful, you really hit your mark!" That's become my stand-by comment, when I am just bumfuzzled, for whatever reason.
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The "think positive and you'll be OK" idea does a lot to make already sick people feel guilty for being sick! How can anybody think that's helpful?
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My MO asked me, when I was going through my first breast cancer treatment, if I really needed my anti-depressants. She was asked to find one that didn't interfere with my chemo and the one I was currently on would. She said I should just try to think happy thoughts, try to be positive. I want to scream at her...try having your breasts chopped off, your body mutilated and scarred, then have poisons pumped into your body that makes you sick, bald and fatigued and afraid that you could die from this disease. After she experienced all that then let's see if she has happy, positive thoughts all the time.
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Aaoaao, I was the one to ask MO if I could get off anti dep & antisnxiety meds now that I feel fine. İt was a big no/no from her she said "that's why you feel good" so I keep using them.
I got to thinking people with weird dearth / positive thinkinking comments to us are really their reflection of their own worries and unsettled thoughts on their own deaths. I don't really tbink they mean good / bad. It's just their trying to get over their worries of "what if it happens to me??" . But this is my weird chemobrain with mood meds talking...😉
Hugs, Ebru0 -
Oh! I have a doozy for you ladies!
"You are dwelling that you HAD cancer." Said by my brother!!!!
I haven't updated my profile but I had surprise mets in both ovaries found AFTER my hysterectomy!0 -
Stagefree, I agree with you that most people probably don't intend to be mean. You're right that they are probably dealing with their own fears of illness and death. I try not to take it to personal and get angry. I guess if I'm in one of my "moods" it rubs me the wrong way.
Asly, sorry for your brother's comment. Maybe you should tell him that if you are dwelling on it, and not saying that you are, it is your right to dwell on something that might kill you. Ask him what he dwell's on for example, not getting a promotion at work, not getting the raise he expected, etc. If people can dwell on things going on in their lives, why can't we dwell on what is a major life change and will be forever that effects us.
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I was at the ER because of the fevers I keep having. They wanted to rule out pneumonia, so I am taken for a chest xray. The xray gal had cancer once, she talked of having chemo and losing her hair. She asks me what kind of cancer I have, did the usual Stage 4 Breast, her - so sorry, then pops up with "don't worry too much about it, lots of people have beaten stage 4" I was stunned into silence....
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Haven't you heard Mzmerz, the Apple company has just bought MBC. MBC S, the new version will soon be out in cancer market!
Hugs
Ebru0 -
Yes - please Mzmerz! Get ahold of yourself and "don't worry too much about it". Afterall.... "lots of people have beaten it". Who are these people? I'm taking names!!!! First of all, she's an x-ray tech - shouldn't she know about stage 4? Second of all, she's had cancer before - shouldn't she know about stage 4? Someone please hand Mzmerz an elephant so she can slap her silly with it!
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Mzmerz, just when you think you've heard it all, someone comes up with another zinger. Hard to believe this woman is a medical 'professional'. It's like she took a class on stupidity and insensitivity and passed with flying colors.
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Been looking for someplace to share this. Yes I am stage 4, yes I am a uniboober, yes I am back in treatment, yes I am almost 60 . But I feel well, and trying to keep moving forward with my life. My divorce is almost final and I think I might like to have someone in my life, not an ureasonable thought. My friend says "why don't you find a coed stage 4 group, you might meet someone there" Is that my only option?? REALLY! I do understand that many might be frightened away, but still, is that my only option. Felt like a leper. Where is the colony?
Thanks for letting me vent
Be well
Nel
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Nel..OMG.. I can't believe a friend would actually say that to you. Would someone say to a person with diabetes...Find a diabetes group to find someone to date. I guess when you're stage iv you should be not lovable.
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I had to add this from last week. I had a PET scan and the tech called me back to the room. I have a nephrostomy tube and she asked me about it. Then she asked what it did and I told her it processed urine directly from my kidney into a collection bag on my side. She said, "OH MY GOSH!!! THAT IS TERRIBLE!!!" Well, gee, I was just getting used to it but now I am back to feeling like it really is terrible.
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That is horrible! People in the medical field, who should be more knowledgeable and more sensitive, can be the worse about making stupid comments. You should have told her "Thanks for letting me know it's a terrible thing since I didn't know that." But then again you can't change stupid.
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Oh, Lord, where do they find these people??
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Nel, my brother made a similar comment to me when we were talking one time. I said that after being divorced once and widowed once, I'm done with having a man in my life, and he said innocently, "Well, men wouldn't want you anyway, with your diagnosis..."
I love my brother, and I know he wouldn't intentionally hurt me, but that was clueless beyond the norm, even for him.
As for people telling me about those who have died, or that the nephrostomy tube was terrible, I have a wicked side in me where I would exclaim very loudly, "Oh, my gosh, are you serious?! I didn't know that!!"
Like my husband, who had his leg amputated from a car accident, and someone commented, "You have a fake leg." He looked down and gasped, "Oh, my gosh! Where did my leg go?!" The guy felt pretty stupid. Yes, let's just state the obvious, as if we didn't know...!
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OH my gosh! She was terrible !!!!!!
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Bon!! I an totally relate to the "when was your last period/could you be pregnant" question!!!
Uh, no...I'm pretty sure since you took out all my vital "lady parts" I am not pregnant nor having my period!!!0 -
OK Fitztwins - I have a need to revive your thread after the evening I just had.
I've just finished my 46th hour on the phone with insurance hassles since
November. Much of the time it is spent on hold with Blue Cross Blue
Shield, but tonight, it was my other favorite - the Federal Marketplace.
2 hours tonight. When I signed up with it in December, it wouldn't allow me to add my daughter, saying she might be eligible for our state's kidcare program. I just received notice 2 weeks ago that we made $1300 too much for her to be eligible, so I decided to add her to my policy via the Martketplace website. Adding my daughter to my policy created a
whole new level of GYAAAAAAAA!!!!!!!! It cancelled my old policy and
maybe/maybe not started a new policy over from scratch (although I've
already met my yearly deductible).Truth is stranger than fiction.
I told the Fed supervisor that I needed to know if I still have
insurance, as I have chemo in 12 hours. She said "what will happen if you
don't get chemo in 12 hours?" I said "the cancer will progress". She
said "would you die in the next 24 to 48 hours if you don't get it?" I
said no. She said "then it's not considered an emergency." I might just
die from a stroke from dealing with these &**$%#%$! If you see a
huge smoke cloud coming from the midwest - it's not a fire - it's coming from my head!0 -
This thread is so funny (in a dark kind of way)!
Can I share the thing I've been stewing over this week? This feels like a safe place to do that. I don't want to hurt my mother's feelings by bringing it up with her, but sheesh it's kind of strange. You need to know that my brother has finished treatment for stage III melanoma and, of course, here I am with stage IV bc. My mother for the third time now has very dramatically told us her "terrible" medical news that just isn't terrible.
First time she sent a family wide email with the subject "Not Cancer" telling everyone how it turns out the lump she had was not cancer after all but an ingrown hair.
Second time she tells me she needs a hip replacement. "Oh my gosh!" I say, "when are you having it done?" to which she replies, "Well, I don't need it now but they think I might in a few years..."
Now this week she's telling anyone who will listen about the growths she had removed that she thought were cancer but turned out to only be warts.
Yep, my brother and I just need to stop whining about our cancer stuff and focus on someone with real problems, you know, like ingrown hairs and warts. Can we find a support group for that?
(and, yeah, I get that it's hard for her to have 2 kids in this situation and I'm probably being kind of unfair, but it just feels like she's getting a bit desperate to get back to being the center of attention again)
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And surfdreams, wishing you well with all the red tape, like you don't have enough to worry about, right?
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I'm newly stage 4 but I've already had a few doosies in less than a week! I told my housekeeper (yes, I'm lucky to have a housekeeper) and she said "Oh my god! My friend had metastatic cancer and she died a week later!". I immediately told her that I don't want to hear those kinds of stories.
My brother asked, "How long do they say you have to live?". I told him that I don't ask that question. First of all, they could only tell me averages at this point and secondly, I'd prefer to ignore the averages and just try my best to live as long as possible.
I guess a lot of people just don't know what to say.
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I took my mom to an eye specialist because she had some nodules on her eyes. I googled it of course an it was a pretty benign thing.
While we were waiting for the Dr. My mom went on about that 'she didn't have time for this' and 'how nerved up' she was.
I looked at her and said, Mom, NOBODY has time for stuff like this, we just do what we have to do. As to the nerves that is what Ativan is for right? She said , "well yours is different its Cancer". Sure she was worried about going blind, (which she isn't)...
It is all relative to ourselves is it not? Empathy is hard to have unless you have experienced it first hand.
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My latest doosy was from my boss who said, "You can't play the C card forever you know!"
Really?? Didn't even know I was 'playing'!!
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Wow, Scandophile! How long has your boss been playing the Idiot - A** card???? What did you say????
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One of my favorite comments was from a dear friend at church who stopped me in the hall one day and said in a very serious voice, "You know, last night I was in a lot of pain. I had a really bad hangnail. And I thought of all you've been through...and I thought, 'Meh...she has no idea what REAL suffering is like!'"
He was joking, of course, but it made me smile because I could tell he understood. He passed away very suddenly a few months later, and I really miss him and his gentle way of joking to lighten the mood. Some people make jokes and it isn't funny. Others make jokes and it's just the right timing and makes you feel better.
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Not sure how I have missed seeing this topic before but love it !!!!!
Maybe we should start a public awareness ad on tv for people to know what is acceptable to say to stage 4 people. Only problem is my emotions keep changing so fast what sets me off one day makes me laugh the next. Generally I understand people are at a loss for words and they r doing their best so I laugh it off but sometimes I am ready to punch someone in the nose.
My favorite : everything's gonna be ok think positive (are you friggin kidding me everything is def not ok next time someone gives me that one... Pow to the moon baby)
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